A diagnosis of MS can cause life to change very quickly, and thinking about a future with the disease can be overwhelming. So many questions come to mind: Will I be able to work? Will I need a wheelchair? Will I have access to the treatments I need? Will I be able to exercise?
My name is Linda, and I am an advocate for myself and others with multiple sclerosis. I live with a progressive form of the disease.
Through a full-time position with a custom transit provider for people with disabilities, I visit assisted living centres, MS clinics and other places where people with MS receive disability services. I have become a resource for people with MS looking for advice beyond the medical community on how to live their lives. I connect people with services that are available, accessible and affordable.
There is no one place to go for the many kinds of support you may need, and systems are often not integrated enough for easy access to those supports.
For instance, physicians are not necessarily aware of people’s transit needs, so I advise those in the medical community to take disability transportation schedules into consideration when booking appointments for people with MS. I tell people in power chairs where and when they should take their devices for maintenance, as many people are not aware of the upkeep an assistive device requires. I connect people with MS with volunteers who can shop for what they need and deliver food and goods to their homes.
First there is the medical system, and then there is the “living life” system. I would like all levels of government to recognize and connect all the pieces of the big picture that is living one’s life completely.